This happened a few days ago, but I wanted to share this story. I haven't blogged in so long, it's like the dams have burst and now I have to get all my blogging out! So tolerate frequent updates until I've gotten it all out of my system. :o)
Last week, my mother was out of town for her uncle's funeral. I think for a normal family, this would have been fine, but my family--my parents, my husband and I--work together every day to care for my terminally ill brother. Having just one member of our team missing can be a big deal.
Fortunately, even though my father and husband had work and my mother was out at the funeral, I had one precious resource to call on: my visiting teachers. For those who don't know, visiting teachers are kind of a trademark of the Mormon church. Every woman in the Church is assigned two visiting teachers, who come visit her once a month with a spiritual message and an offer of service. Typically, I can't think of any particular ways for my visiting teachers to serve me, but this time, I could. I asked them if they wouldn't mind taking turns stopping by the house in the afternoon, to help me move my brother out of his wheelchair. Since my brother is as big as I am, and also I'm five and a half months pregnant, it's not that easy to just lift him out of his giant wheelchair and position him safely and comfortably in his hospital bed or armchair.
Fortunately, my amazing VTs stepped in to save the day. On Friday, one of my VTs (we'll call her Terry) stopped by to help me move J. He had soaked through his diaper and all his clothing, and he just looked miserable. When we started to move him, he started to cry, so I ended the operation and tube-fed him some pain meds. We waited for a minute and then moved him to the hospital bed in the living room.
I told Terry, I can't change J anymore. I'm pregnant, and I know for a fact he harbors diseases that could kill my baby. Immediately, Terry offered to do it. I was amazed. Changing the diaper of a grown man is unpleasant in the best of circumstances, but on top of that my brother's hamstring contracture means you have to change him while his knee is essentially glued to his torso. And again, he's kind of disease-riddled.
But she just did it. She did it all. She changed him, and together we cleaned him and changed all his clothes--again, a difficult task when the guy is 5'4 and hypotonic and has a knee practically glued to his chest. But we did it all. He helped us get his shirt on, too. It was a really interesting moment: Terry seemed so happy to be able to provide that service for J, and J seemed so happy to be able to provide service for us, even if it was only in the form of him pointing his arms so his sleeves would go on better.
After he was all set, the three of us just sat together for a while. It was a unique moment. I've thought about it a lot since, and about the importance of service, and how even when service isn't very fun or enjoyable, it's always rewarding when it's been given with a cheerful heart.
Anyway, that experience really touched me and I wanted to share it with you. I think I learned from J that anyone can serve--even the most handicapped kid around can help get his arms into sleeves--and that service happily given is the best kind of gift around. I am so grateful for my amazing visiting teachers!
Monday, February 28, 2011
explaining my older brother
Since any blog I write will necessarily have to deal with my older brother, here's what you need to know.
My older brother, James, is 24 going on 25. He was born with a chronic degenerative metabolic defect that doctors still haven't diagnosed. He has seizures every few minutes, and has for years; he eats through a g-tube; he can't talk or communicate in any really specific way (although he does smile when he's happy and look like a grumpface when he's not. I guess that counts as communication?).
In September 2009, he fell at his day care and broke his hip, at the ripe old age of 23. He had a hip replacement, and was able to walk shortly afterward, but then the pain medication they put him on caused some adverse reactions that required a few surgeries and a long hospital stay. One of the reactions was an hours-long seizure that left his left hamstring in a permanent contracture. Needless to say, he hasn't been able to walk since. In recent months, he's stopped bearing weight on his other leg, either, so my darling flamingo brother has even left his flamingo days behind. He still goes to his same day care, in his giant wheelchair, and then he comes home and watches TV from a hospital bed until he goes to actual bed.
James's life expectancy is short. Pretty much every single year, doctors say that he has one more year, or a few more months, to live. They've been saying that for, oh, about 24 years, so we don't really listen to them on that count anymore. Still, recently we put James on hospice, which has been amazing. We are so grateful for hospice! As hospice itself says, it's really not a service for everyone (which is a pretty good thing, when you think about it). But for the people it's meant to serve, it's fantastic.
We don't know how much longer he'll be with us, and to be honest, we're all praying that it's not too much longer. He's in pain, and there's not a ton of hope that that will change, and we believe in Jesus Christ and the power of His grace through the Atonement and the Resurrection. I know that while my brother's life on earth requires him to suffer, one day he will be blessed with a perfect body, through the grace of Jesus Christ, and that he and I will be able to rejoice in our relationship as brother and sister forever.
I don't often think about that, because it usually makes me cry, but I really do cherish that knowledge. It is so amazing to me that through Heavenly Father's Plan of Happiness, my brother and I--along with my other siblings and my parents--can be reunited someday, and that my brother will finally get to know the joy of having a body that functions. I am so excited to hear him speak for the first time, and to hear him sing. He's always loved music and I'm sure that he's inherited some of the musicality of my father's side. Sometimes when a song comes on TV, he'll tap his toes to the beat, even despite the pain in his legs. This is a guy that loves music. It will be so cool when he can actually dance.
me and my brother
My older brother, James, is 24 going on 25. He was born with a chronic degenerative metabolic defect that doctors still haven't diagnosed. He has seizures every few minutes, and has for years; he eats through a g-tube; he can't talk or communicate in any really specific way (although he does smile when he's happy and look like a grumpface when he's not. I guess that counts as communication?).
In September 2009, he fell at his day care and broke his hip, at the ripe old age of 23. He had a hip replacement, and was able to walk shortly afterward, but then the pain medication they put him on caused some adverse reactions that required a few surgeries and a long hospital stay. One of the reactions was an hours-long seizure that left his left hamstring in a permanent contracture. Needless to say, he hasn't been able to walk since. In recent months, he's stopped bearing weight on his other leg, either, so my darling flamingo brother has even left his flamingo days behind. He still goes to his same day care, in his giant wheelchair, and then he comes home and watches TV from a hospital bed until he goes to actual bed.
James's life expectancy is short. Pretty much every single year, doctors say that he has one more year, or a few more months, to live. They've been saying that for, oh, about 24 years, so we don't really listen to them on that count anymore. Still, recently we put James on hospice, which has been amazing. We are so grateful for hospice! As hospice itself says, it's really not a service for everyone (which is a pretty good thing, when you think about it). But for the people it's meant to serve, it's fantastic.
We don't know how much longer he'll be with us, and to be honest, we're all praying that it's not too much longer. He's in pain, and there's not a ton of hope that that will change, and we believe in Jesus Christ and the power of His grace through the Atonement and the Resurrection. I know that while my brother's life on earth requires him to suffer, one day he will be blessed with a perfect body, through the grace of Jesus Christ, and that he and I will be able to rejoice in our relationship as brother and sister forever.
I don't often think about that, because it usually makes me cry, but I really do cherish that knowledge. It is so amazing to me that through Heavenly Father's Plan of Happiness, my brother and I--along with my other siblings and my parents--can be reunited someday, and that my brother will finally get to know the joy of having a body that functions. I am so excited to hear him speak for the first time, and to hear him sing. He's always loved music and I'm sure that he's inherited some of the musicality of my father's side. Sometimes when a song comes on TV, he'll tap his toes to the beat, even despite the pain in his legs. This is a guy that loves music. It will be so cool when he can actually dance.
Sunday, February 27, 2011
Baby pictures
I promised I would post some pictures of that darling Baby Doozit that we are all so excited for. Here we go!
Here are Baby Doozit's perfect feet:
Baby D's arm and fist, up by his head:
Baby's legs, plus the umbilical cord in between them! Not a gender-showing picture:
And here he is, full profile:
We are so happy. I know that one of the greatest blessings we have is the chance to be with our families forever and I am so grateful that Baby D is now a part of my family.
Can't wait to meet this little dude. I can tell by the way he kicks my guts that he is already destined for ultimate ninjahood. It's going to be awesome.
Here are Baby Doozit's perfect feet:
Baby D's arm and fist, up by his head:
Baby's legs, plus the umbilical cord in between them! Not a gender-showing picture:
And here he is, full profile:
We are so happy. I know that one of the greatest blessings we have is the chance to be with our families forever and I am so grateful that Baby D is now a part of my family.
Can't wait to meet this little dude. I can tell by the way he kicks my guts that he is already destined for ultimate ninjahood. It's going to be awesome.
We're BLOGGING! and other new things
Carl and I decided that the time has come to start a family blog--since we're finally starting a family and all.
Baby Doozit is due on June 29 (although wouldn't it be cool if he came on July 4? It's possible!). We found out a few weeks ago that Baby D is a BOY and he is essentially the cutest little pre-born baby ever. I'll post some cute feet pics in a while.
Our lives have been pretty rad. Recently my parents bought a house down the street from them, and Carl and I are moving in sometime in April or May. We'll be renting it for as long as we're in Maryland, I guess. At least for the foreseeable future. We're so excited to have some space to ourselves--but still be close enough to the fam to help care for my handicapped brother.
Let's see. New home, new baby. Carl got a new job a few weeks ago. This is a new blog. Carl just got a new calling at church. So many new things! We have a lot to be grateful for.
:o)
Baby Doozit is due on June 29 (although wouldn't it be cool if he came on July 4? It's possible!). We found out a few weeks ago that Baby D is a BOY and he is essentially the cutest little pre-born baby ever. I'll post some cute feet pics in a while.
Our lives have been pretty rad. Recently my parents bought a house down the street from them, and Carl and I are moving in sometime in April or May. We'll be renting it for as long as we're in Maryland, I guess. At least for the foreseeable future. We're so excited to have some space to ourselves--but still be close enough to the fam to help care for my handicapped brother.
Let's see. New home, new baby. Carl got a new job a few weeks ago. This is a new blog. Carl just got a new calling at church. So many new things! We have a lot to be grateful for.
:o)
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